“I worry that colleagues and managers will see me as a weak link, and pass me over when it is time to reallocate job roles, leadership opportunities, extra work hours.”
Photograph: Alamy

I have a chronic, disabling condition. The symptoms are similar to those of an acquired brain injury with a sudden onset. For over a year I didn’t really know what was going on: I couldn’t process information, I couldn’t follow a conversation, I couldn’t think. I had panic attacks because I got lost and disoriented. I felt like I had lost myself.

It’s described as “brain fog”, this condition where you cannot focus, cannot remember, understand, process or think. The symptom is associated with a range of conditions: from hormone deficiencies to auto-immune conditions such as multiple sclerosis, ME, chronic fatigue, fibromyalgia and the side effects of chemotherapy. A friend experiences the brain fog as a constant, pervasive presence; a colleague says it can strike without warning, then lift, but it will always strike again.

Academic colleagues, where was your support for my chronic illness?

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When I had brain fog I couldn’t teach. I struggled to write. Everything took me so much longer. I could mark only five 2,000-word essays in a day, and then I was wiped and went to bed at 6pm.

I was terrified of losing my job. I was referred to occupational health and given a reduced workload while having test after test. I was told to focus on the bits I could do, and get better. My manager was supportive, but my team was obviously frustrated that I wasn’t pulling my weight. Eventually I found a consultant who worked with me and began treatment with medication. As long as I keep taking the drugs throughout the day every day and am monitored for ongoing problems I can now function.

Surfacing from that period, I took stock of where I was, and began to notice others’ perceptions of me. I had to make up for the work I hadn’t done and prove myself all over again, hiding my chronic condition as I did so. I saw that I wasn’t taken as seriously as a researcher any more.

So how do I feel about disclosure? I am considered “lucky” in that I can hide behind the invisibility of my condition. Looking at me, other people would not know there was anything wrong. Even on a bad day, or if I miss a dose of medication, they might think I was tired or hung over. But I live with the knowledge that, if I push myself too far, I could end up in hospital and, without treatment, dead. I meet both the 2010 Equality Act and the 1994 Disability Act definitions of someone who has a disability.

The elephant in the room is ableism. Ableism is discrimination in favour of able-bodied people, people who are not ill or disabled, who are neurotypical. It is discrimination and social prejudice against people who fall outside those boundaries. Ableism characterises such people as defined by their disabilities and sees them as inferior.

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I am not the only one experiencing and reporting ableism in universities. There are even events – and invitations for people to contribute – trying to bring together higher education staff affected by ableism and build manifestos for how we want our institutions to work with us.

I want to go, and to do a presentation and write a chapter in their edited collection But I worry that disclosing a disability will mean that I will only be seen in those terms. I worry that colleagues and managers will see me as a weak link, and pass me over when they reallocate job roles, leadership opportunities, extra work hours. I worry that I will not be seen as an ambitious, valuable scholar, that my disability will stop me achieving.

I do not conceal other aspects of my identity, so I should not pretend I lack a disability. But I am scared of putting my head above the parapet, and feeling that I have to justify why, how and to what extent I am disabled. I am scared of the consequences for my work – either being dismissed as the ill one or being told that I should forget my discipline and focus instead on writing about ableism and disability, because I fit in better there, as happened to a friend with a hidden disability.

I have decided that I should tick that box. But I am still scared.Join the higher education network for more comment, analysis and job opportunities, direct to your inbox. Follow us on Twitter @gdnhighered. And if you have an idea for a story, please read our guidelines and email your pitch to us at highereducationnetwork@theguardian.com.

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